EDS Awareness Month: Types & facts of Ehlers Danlos

I apologise for not getting a post uploaded last week for EDS awareness, I really had hoped to get this post up before now however I’ve been in and out of hospital a lot last week and as usual EDS has been getting in the way of my life and the things I want to do. However nonetheless this week instead I hope to upload two posts instead.

During my last post I explained the basis of what EDS is and the meaning behind the zebra sign for the condition. For those who missed out on that post and want to know more you can click here to direct you back to the previous post. Therefore this week I’d like to tell you about some of the different types of EDS and various other facts about it.

Ehlers Danlos Syndrome can in fact be described as an umbrella term which encompasses numerous different types of EDS and with the degree of severity ranging between types and individuals. Every single EDS patient is unique and the majority of time symptoms differ from one person to the next, regardless of whether they have the same type of EDS or not. Although many with EDS can lead full and active lives for some it can lead to physical disability. For those affected more severely, EDS to be very life-limiting whilst some of the other types of EDS are life threatening.

In total there are 7 types of EDS which vary in severity and rarity; I will list these types and explain a few of them as best as I can:

1. EDS Hypermobility

2. EDS Vascular

3. EDS Classical

4. EDS Kyphoscoliosis

5. EDS Dermatosparaxis

6. EDS Arthrochalasia

7. EDS Tenascin-X Deficient

I think the easiest way to explain 3 types of EDS, hypermobility, classical and vascular, is to list the symptoms associated with each type for EDS UK.

general tissue fragility leading to hernia, pelvic floor prolapse and cervical instability.

loose, unstable joints leading to subluxations and dislocations.

prematurely aged face.

dermatological symptoms are often more pronounced that EDS hypermobility type.

Please know however this isn’t an exhaustive list and patients can find they have symptoms across different types of EDS rather than their symptoms being contained in one type, for example I have EDS hypermobility type, yet I have some symptoms from other types, such as having talipes equinovarus (club foot) at birth and atrophic scarring, usually this is then described as EDS hypermobility with cross overs. It is important that a patient is then genetically tested to discover which type of EDS they actually have.

EDS is not a laughing matter, it is serious and it is heartbreaking that there isn’t enough knowledge about it as in the past this has had serious implications. When the medical profession don’t know EDS or it’s symptoms not only can it lead to distress for the patient but it can also lead to death.

Sadly here are too many times where EDS ends in death, this may seem blunt but unfortunately it is the truth. There is no where near enough money or research into this heartbreaking monster condition and this needs to change. It’s time to change before more lives are lost. We deserve this research to stop before more people pass away from EDS, for the people who have already lost their lives to this and the people still fighting we need to get our government aware of this, we need to get society aware of this and we need our medical profession to be aware of this too.

Please help this cause to stop more people, like this child, from dying from EDS.